Intensive out-of-hospital coaching for frequently hospitalized COPD patients::a before-after feasibility study

Background. This study assesses whether out-of-hospital coaching of re-hospitalized, severe COPD patients by specialized respiratory nurses is feasible in terms of cost-effectiveness, implementation, and recipient acceptability. The coaching was aimed at improving patients’ health management abilities, motivation for healthy behavior, strengthening the professional and informal care network, stimulating physiotherapy treatment and exercise training, improving knowledge on symptom recognition and medication use, and providing safety and support. Methods. Cost-effectiveness of 6 months of out-of-hospital coaching was assessed based on a before-after intervention design, with real-life data and one-year follow-up. A total of 170 patients were included. Primary (questionnaires, meeting reports) and secondary data (insurance reimbursement data) were collected in one province in the Netherlands. The implementing and recipient acceptability was assessed based on the number of successfully delivered coaching sessions, questionnaire response rate, Patient Reported Experience Measure, and interviews with coaches. Results. Post-intervention, the COPD-related hospitalization rate was reduced by 24%, and patients improved in terms of health status, anxiety, and nutritional status. Patients with a high mental burden and a poor score for health impairment and wellbeing at the start of the intervention showed the greatest reduction in hospitalizations. The coaching service was successfully implemented and considered acceptable by recipients, based on patient and coach satisfaction and clinical use of patient-reported measures.Conclusion. The study demonstrates the value of coaching patients out-of-hospital, with a strong link to primary care, but with support of hospital expertise, thereby adding to previous studies on disease- or self-management support in either primary or secondary care settings. Patients benefit from personal attention, practical advice, exercise training, and motivational meetings, thereby improving health status and reducing the likelihood of re-hospitalization and its associated costs

A prospective web-based patient-centred interactive study of long-term disabilities, disabilities perception and health-related quality of life in patients with multiple sclerosis in The Netherlands:The Dutch Multiple Sclerosis Study protocol

BACKGROUND: In the past two decades the widespread use of disease modifying drugs with moderate to strong efficacy has changed the natural course of multiple sclerosis (MS). Health care professionals, researchers, patient organizations and health authorities are in need of recent information about the objectified and subjective long-term clinical outcomes in MS patients. Such information is scarce. METHODS/DESIGN: We started a prospective, web-based, patient-centred, interactive study of long-term disabilities, disabilities perception and health-related quality of life (HRQoL) in MS patients in The Netherlands (Dutch Multiple Sclerosis Study). The study has an on online patient-driven inclusion and online acquisition of patient-reported outcomes (PROs). At six-months intervals participants complete the Multiple Sclerosis Impact Profile (MSIP) (disabilities and disabilities perception in seven domains and four symptoms), the Multiple Sclerosis Quality of Life-54 items (MSQoL-54), the Modified Fatigue Impact Scale-5 items (MFIS-5) and the Leeds Multiple Sclerosis Quality of Life-8 items (LMSQoL) questionnaires, and a Medication and Adherence Inventory. Every three years the Expanded Disability Status Scale (EDSS) score is assessed by phone. The monthly completion of the MFIS-5, LMSQoL and Medication and Adherence Inventory is optional. Completed questionnaires and inventories, and automatically generated scores are made available online to patients for self-monitoring and self-management purposes, and to authorized health care professionals for the evaluation of disease activity and of the effectiveness of treatments. Study duration is planned to be 15 years. Results will be analyzed periodically using means and standard deviations for continuous variables, and frequencies for categorical variables. Relations between time points, variables, patient and treatment characteristics will be evaluated in random effects repeated measures models. DISCUSSION: The Dutch Multiple Sclerosis Study is characterized by online patient-driven inclusion; online data acquisition; the use of PROs; the optional monthly completion of short questionnaires; the interactive use of personal study data by patients and authorized health care professionals for self-monitoring, self-management and multidisciplinary care; the expected representativeness of the study sample; and a long-term time horizon. The study will provide valuable data on long-term disabilities, disabilities perceptions and HRQoL in MS patients in The Netherlands

[18F]FDG PET/CT-based response assessment of stage IV non-small cell lung cancer treated with paclitaxel-carboplatin-bevacizumab with or without nitroglycerin patches

Purpose Nitroglycerin (NTG) is a vasodilating drug, which increases tumor blood flow and consequently decreases hypoxia. Therefore, changes in [18F] fluorodeoxyglucose positron emission tomography ([18F] FDG PET) uptake pattern may occur. In this analysis, we investigated the feasibility of [18F] FDG PET for response assessment to paclitaxel-carboplatin-bevacizumab (PCB) treatment with and without NTG patches. And we compared the [18F] FDG PET response assessment to RECIST response assessment and survival. Methods A total of 223 stage IV non-small cell lung cancer (NSCLC) patients were included in a phase II study (NCT01171170) randomizing between PCB treatment with or without NTG patches. For 60 participating patients, a baseline and a second [18F] FDG PET/computed tomography (CT) scan, performed between day 22 and 24 after the start of treatment, were available. Tumor response was defined as a 30 % decrease in CT and PET parameters, and was compared to RECIST response at week 6. The predictive value of these assessments for progression free survival (PFS) and overall survival (OS) was assessed with and without NTG. Results A 30 % decrease in SUVpeak assessment identified more patients as responders compared to a 30 % decrease in CT diameter assessment (73 % vs. 18 %), however, this was not correlated to OS (SUVpeak30 p = 0.833; CTdiameter30 p = 0.557). Changes in PET parameters between the baseline and the second scan were not significantly different for the NTG group compared to the control group (p value range 0.159-0.634). The CT-based (part of the [18F] FDG PET/CT) parameters showed a significant difference between the baseline and the second scan for the NTG group compared to the control group (CT diameter decrease of 7 +/- 23 % vs. 19 +/- 14 %, p = 0.016, respectively). Conclusions The decrease in tumoral FDG uptake in advanced NSCLC patients treated with chemotherapy with and without NTG did not differ between both treatment arms. Early PET-based response assessment showed more tumor responders than CT-based response assessment (part of the [18F] FDG PET/CT); this was not correlated to survival. This might be due to timing of the [18F] FDG PET shortly after the bevacizumab infusion

The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis:utilization and valuation by patients

Background: MSmonitor is an interactive web-based program for self-management and integrated, multidisciplinary care in multiple sclerosis. Methods: To assess the utilization and valuation by persons with multiple sclerosis, we held an online survey among those who had used the program for at least 1 year. We evaluated the utilization and meaningfulness of the program's elements, perceived use of data by neurologists and nurses, and appreciation of care, self-management, and satisfaction. Results: Fifty-five persons completed the questionnaire (estimated response rate 40%). The Multiple Sclerosis Impact Profile (MSIP), Medication and Adherence Inventory, Activities Diary, and electronic consultation (e-consult) were used by 40%, 55%, 47%, and 44% of respondents and were considered meaningful by 83%, 81%, 54%, and 88%, respectively. During out-patient consultations, nurses reportedly used the MSmonitor data three to six times more frequently than neurologists. As to nursing care, more symptoms were dealt with (according to 54% of respondents), symptoms were better discussed (69%), and the overall quality of care had improved (60%) since the use of the program. As to neurological care, these figures were 24%, 31%, and 27%, respectively. In 46% of the respondents, the insight into their symptoms and disabilities had increased since the use of the program; the MSIP, Activities Diary, and e-consult had contributed most to this improvement. The overall satisfaction with the program was 3.5 out of 5, and 73% of the respondents would recommend the program to other persons with multiple sclerosis. Conclusion: A survey among persons with multiple sclerosis using the MSmonitor program showed that the MSIP, Medication and Adherence Inventory, Activities Diary, and e-consult were frequently used and that the MSIP, Medication and Adherence Inventory, and e-consult were appreciated the most. Moreover, the quality of nursing care, but not so neurological care, had improved, which may relate to nurses making more frequent use of the MSmonitor data than neurologists

The genetic architecture of the human cerebral cortex

The cerebral cortex underlies our complex cognitive capabilities, yet little is known about the specific genetic loci that influence human cortical structure. To identify genetic variants that affect cortical structure, we conducted a genome-wide association meta-analysis of brain magnetic resonance imaging data from 51,665 individuals. We analyzed the surface area and average thickness of the whole cortex and 34 regions with known functional specializations. We identified 199 significant loci and found significant enrichment for loci influencing total surface area within regulatory elements that are active during prenatal cortical development, supporting the radial unit hypothesis. Loci that affect regional surface area cluster near genes in Wnt signaling pathways, which influence progenitor expansion and areal identity. Variation in cortical structure is genetically correlated with cognitive function, Parkinson's disease, insomnia, depression, neuroticism, and attention deficit hyperactivity disorder

Online self-management in patients with COPD: with or without the doctor/nurse

INTRODUCTION: Curavista Health is an online patient self-management platform. Patients use the platform with or without their doctor/nurse. Fifty centres in Benelux are using the platform for diabetes, hypertension, asthma, COPD, migraine, Parkinson’s Disease, Multiple Sclerosis, breast cancer, prostate cancer, LUTS, bi-polar diseases, chronic pain, Herpes Zoster, GERD, preConsult, and adherence to medical therapy. Many hospitals use one or more programmes. The platform is currently available in Dutch, English and French. COPD: Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease in the elderly. Airways are increasingly blocked and exacerbations (increase of symptoms) are common. Exacerbations ameliorate the disease and diminish the quality of life. Exacerbations are responsible for most of the augmenting costs of treating COPD. Self-management is a promising method as patients learn to recognize and treat as early as possible exacerbations. CASE STUDY: The case study is called: mijncopdonline.nl. It is a self management programme that consists of 3 basic elements: status (CCQ, BMI, FEV1, MRC-dyspnoea, medication); self management (how do I feel today and what are my specific actions?); eConsult. Since mid-2008 patients can register online and participate in the programme (without involving their GP/pulmonologist/nurse). The pulmonary division of the Havenziekenhuis (division of the Erasmus MC) started using the programme in October 2010 and incorporated it into their daily routine. All out-patients can participate. The team monitors patients online, exchange eConsultations with patients and discusses the results during the regular visit. RESULTS: We compared the adherence to the programme in two groups: (1) the group without the doctor/nurse as a coach (n=495) and (2) the group with the doctor/nurse as a coach (n=42). The content of the programme was identical in both groups. Age and gender were similar in both groups and was representative of the overall COPD population of the Havenziekenhuis. In the group without coaching, 65% of participants used the programme once, 22% twice and 13% three times or more. In the group with coaching, 24% used the programme once, 14% twice and 62% three times or more. DISCUSSION: Self-management is a hot topic. Self-management in itself is not new: patients have been keeping diaries on paper for many years. However, in recent years, online database technology has provided an opportunity to create interactive, personalized, self-management programmes, often referred to as eHealth. The word ‘self-management’ suggests that patients manage themselves and the role of the professional is limited. However, these data suggest that participants make better use of eHealth programmes when supported by healthcare professionals. Therefore eHealth should be embedded into regular care in order to be fully effective

The Interactive Web-Based Program MSmonitor for Self-Management and Multidisciplinary Care in Persons With Multiple Sclerosis: Quasi-Experimental Study of Short-Term Effects on Patient Empowerment

Contains fulltext : 217424.pdf (publisher's version ) (Open Access

A prospective web-based patient-centred interactive study of long-term disabilities, disabilities perception and health-related quality of life in patients with multiple sclerosis in The Netherlands: The Dutch Multiple Sclerosis Study protocol

Background: In the past two decades the widespread use of disease modifying drugs with moderate to strong efficacy has changed the natural course of multiple sclerosis (MS). Health care professionals, researchers, patient organizations and health authorities are in need of recent information about the objectified and subjective long-term clinical outcomes in MS patients. Such information is scarce. Methods/Design: We started a prospective, web-based, patient-centred, interactive study of long-term disabilities, disabilities perception and health-related quality of life (HRQoL) in MS patients in The Netherlands (Dutch Multiple Sclerosis Study). The study has an on online patient-driven inclusion and online acquisition of patient-reported outcomes (PROs). At six-months intervals participants complete the Multiple Sclerosis Impact Profile (MSIP) (disabilities and disabilities perception in seven domains and four symptoms), the Multiple Sclerosis Quality of Life-54 items (MSQoL-54), the Modified Fatigue Impact Scale-5 items (MFIS-5) and the Leeds Multiple Sclerosis Quality of Life-8 items (LMSQoL) questionnaires, and a Medication and Adherence Inventory. Every three years the Expanded Disability Status Scale (EDSS) score is assessed by phone. The monthly completion of the MFIS-5, LMSQoL and Medication and Adherence Inventory is optional. Completed questionnaires and inventories, and automatically generated scores are made available online to patients for self-monitoring and self-management purposes, and to authorized health care professionals for the evaluation of disease activity and of the effectiveness of treatments. Study duration is planned to be 15 years. Results will be analyzed periodically using means and standard deviations for continuous variables, and frequencies for categorical variables. Relations between time points, variables, patient and treatment characteristics will be evaluated in random effects repeated measures models. Discussion: The Dutch Multiple Sclerosis Study is characterized by online patient-driven inclusion; online data acquisition; the use of PROs; the optional monthly completion of short questionnaires; the interactive use of personal study data by patients and authorized health care professionals for self-monitoring, self-management and multidisciplinary care; the expected representativeness of the study sample; and a long-term time horizon. The study will provide valuable data on long-term disabilities, disabilities perceptions and HRQoL in MS patients in The Netherlands